The long-term affects of having an aberrant immune system.

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I randomly cannot feel my fingers.

After 40+ odd years of an immune system that thinks everything is the enemy, the fight is starting to take it's toll.

My adrenal system is weakening. My healing has slowed. "Free radicals" aka toxins released due to allergic reactions have finally found their way to my nervous system.

There's a ringing in my ears right now. It's just the start. The bell that tolls before my entire nervous system decides it's had enough. The sound of warning before sounds become train whistles to my psyche, before the drop of a pin starts to sound like carpet bombing, before the sound of my heartbeat causes pain so excruciating that my eyes water uncontrollably.

I went to the bathroom and my legs fell asleep before I could rise again. My left arm is currently numb making typing difficult.

There is a war inside my body, and it is endless.

I wish I could live in a bubble.

And for that I could use your help.

My bubble project

A good day with food allergies

For those of you with lots of food allergies that are hard to handle, hopefully you'll understand this.

I woke this morning with the actual "want to do something" feeling. Since I rarely wake with any energy to even get out of bed, let alone any desire to do anything, this morning is a rare one.

My plans should I have energy for today were:
Clean house.
Finish unpacking/sorting/throwing away stuff.
Clean the kitchen.
Do laundry.
Bake something to portion out and freeze for later.
Do some writing.
Get some work done on my projects
Send out some resumes.

Unfortunately this wasn't an "energy to do what I need to do" but just a "want to do something fun" and my energy/desires wanted nothing to do with my to-do list… For once.. I actually had energy to do something else..

If someone invited me to go mountain climbing.. I probably would have said yes. Dive out of an airplane? Sure. Backpack across Europe? Lets go.

I'd have settled for a long walk but then it's 97 degrees out and sunny. Relatively certain I'd get 2 blocks and just walk right back.

Nevertheless anything I would not normally do sounds really fun today. (I wonder if this is what people call the "Zest for Life".)

I attempted to talk myself into cleaning and unpacking with the idea that I would then invite friends over for board games and booze.

And as I was debating on where to start first and being overwhelmed with the amount of stuff I'd need to do in order to actually make my place presentable… I realized that today is the best day I've had in months.

I'm still debating on whether to use my energy for cleaning or to just go out with the dog.

But I realized I hadn't written lately at all here, and realized I hadn't written anything about good days.  The one's where you can put two coherent sentences together, and run up and down the stairs without getting dizzy or feeling like your lungs are shutting down for repairs.

The ones were you feel.. normal.

(PS - I'm also looking for guest posts for this blog. Subjects - what it feels like to have food allergies or intimate stories to portray life with food allergies. Submit to simplyvmail at gmail)

Trying on clothes could kill you. Allergic reactions to stores and starches

Today I went and splurged. I can't really afford it, but I sooo needed it for my own mental health. I started a new job and keep gaining weight (read allergy swelling and allergy induced type 2 diabetic issues) which I need to get under-control but haven't been able to.

In the meantime, I've been wearing what I have left of the "fat clothes" from a few years ago when I was this size (prior to my food allergy discovery). These clothes, while they fit, are outdated and make me feel frumpy and ugly.

It's one thing to walk around with allergy-induced cankles, it's quite another to do it in clothes that just add to the feeling of ugly.

I just couldn't take it anymore, so I went shopping.

I was supposed to go out with a friend tonight so I also wanted to get something presentable and "sexy-ish" for going out.

What I'd forgotten was just how bad shopping could make me feel.

I entered the store and went to town on their clearance section looking for anything remotely fashionable and wouldn't go out of style too quickly.

I ended up with about 4 arm loads of clothes to try on, and I head to the dressing room.

It's a trying on clothes fiesta!  Clothes are flying on and off me as I look for something fantastic to buy.

About an hour or so into it, I start choking as if I swallowed wrong, and at first I think I must have just swallowed wrong.  But then I cough again, and my lungs this time feel dry and I cough a bit more, and still feel like I'm choking.

Crap.

I'd forgotten about the clothes being full of corn starch, and when clothes are flying around the room of course it gets in the air and down my windpipe.

I pull out my benadryl and take two.

I end up finding a few things: two fancy tshirts, a blouse, a pair of jeans, and a dress that looks awesome all for $75.

Unfortunately, by the time I got home I was so tired I didn't go out tonight. My skin feels so dry it might crack open. My cankles are back full force. I got "sick" in the bathroom, and I'm starving but absolutely no energy to do anything about it. I swear all my joints hurt.

My fancy new clothes are just sitting here waiting for me to wear them, and I really really want to... But I'd rather lay in bed and go to sleep.

I really love/hate shopping.

Digestive Belligerence: When your body refuses to digest allergenic foods.

Last night was an eye opener for me. I'd always (well since the food allergy discovery) known that eating my allergens caused my digestion to halt to a very slow crawl, causing me to experience such lovely things as reflux, gas, indigestion, and diarrhea.

However, since having AAT treatments during 2009, I have developed a new allergy symptom which I believe is merely a worsening of a previous symptom. Actually, thinking about it, I think I might have had these episodes twice prior two AAT, but very far apart.

The episodes start with feeling a starving fullness. Where your stomach feels full, but you're still hungry. Usually the hunger is for sweeter foods or sugar. Then starts the cramping, the reflux, and the feeling of having a massive burp coming, but never does.

That, is the beginning and in mild cases it tends to stop there if I ate something sugary, as it seemed to start digestion going and everything was hunky dory.

However, in extreme cases of "Digestive Belligerence" (my new term for what my digestive system has decided on its own to do), my body seems to completely refuse to digest certain foods. Onion right now seems to be the biggun. It just sits there. Festers. Ferments. Rots. In my stomach. (Feels a lot like I'm trying to digest razor blades)

Lovely right? Most meals (I looked it up) digest within 90 minutes, or at the very least most of the contents are gone in 90 minutes.

This did not happen last night.  Around 6pm, I ate a meal.  Around 8pm, I started craving sugar like no one's business. So I made myself some pancakes and ate several. At 10pm, my stomach was on fire. Twenty minutes later my entire body felt like it was on fire. The pain in my upper abdomen & chest was excrutiating, and I remember half-praying for death to come quickly.

I tried benadryl. The pain lessened from 10 to a 9, but didn't completely go away. I know from past experience not to waste my expensive compounded tylenol because it does absolutely no good.

After an hour of pain, I decided to give puking a try. I figured it couldn't hurt, and worst case there'd be nothing in there anyway.

At this point, I was just grasping at straws. I figured by this time all the food would be in my colon or intestines already and forcing myself to puke would do nothing.  But after an hour of that pain with bloating and so feverish that I would have welcomed walking out into the artic tundra, I was willing to give anything a shot.

I am not a puker. I can pretty much count the amount of times I've puked on my fingers and probably have a couple fingers left over. Even with years of reflux, I never let myself puke. I hate puking. So I had to force myself to puke.

Up came my entire dinner. The pancakes which I ate later were not to be found, but the entire contents of my 6pm dinner were there in clearly recognizable pieces, 4 hours or more after I'd eaten them. (There was a lot of food in there.)

Immediately after emptying the contents of my stomach, I felt fine. Fever gone. Pain nearly gone (dull roar).

Gastroparesis.

I looked it up. Every case it says there is damage to a certain nerve. I don't think that's my issue as I can normally eat without this issue 99% of the time.

I think my body just refuses to digest certain foods that it finds unsuitable. It's probably trying to protect me. Digestive Belligerence, I tell you.

After that, I was starving and yet not very keen on eating. I tried a smoothie and drank a little bit which was as much as I could mentally stomach. I also think it was too acidic.

14 hours later, I still couldn't fathom eating solid foods and drank water. 24 hours later, I'm suddenly finding food a little enticing. I think I might be hungry. But solid food? It's going to take me a while to warm up to that.

Reflux, Nausea, Edema - Just par for the course of food allergies

I'm having new versions of the same old adventures, and attempting to relearn my own body right now.

Nearly 2 years ago, I started getting AAT treatments to alieviate my food allergies. It didn't work, or at least it didn't seem to do much of anything as I spent the last part of last year and nearly all of this year with the same if not worse food allergy concerns.

Then about a month ago, I suddenly became able to eat some foods that would have been previously dangerous. Then more foods, and more foods. Once in a while a food adventure would cause a reaction, but never the foods I thought would cause a problem.

It was craziness trying to predict what would or would not cause me problems. Even typing this out, I feel like a crazy person.

Prior to AAT, I knew darn good and well to what I was and was not allergic. It was predictable, guaranteed reactions. After AAT, everything became a crapshoot for a while, then nothing was safe, and for a few days recently I wondered if I was allergic to anything anymore.

Confused yet? So was/am I.

I've figured out a few things.

I still can't eat carrots. Don't even ask me to. You know those scenes in comedy movies where the person accidentally ingests laxatives and just barely makes it to the toilet before exploding. Yeah, its kinda like that.

I still can't eat squash. I still can't keep it down. I can't even pretend to keep it down. As quick as I swallow is how quick it returns to the surface. Pretty, I know.

I haven't tried real hard, but pretty sure cruciferous veggies are still a no-go. I had a bite of broccoli about a week or so ago. Despite the fact that while chewing it it tasted reminiscent of dirt (yes I've tasted dirt. What tomboy from the midwest rural areas worth her salt hasn't tasted dirt?), it sat in my stomach like lead for hours.

But what's really getting me right now are onions. Thursday night I ate some Tomato Basil soup which had chunks of onion (unbelieable to me as it's a puree soup, so they had to have added the chunks after they pureed the soup defeating the whole purpose of puree). I ended being up for the next 5 hours with reflux, burping, and swelling/edema. Even though I'd eaten other things after the soup, still I burped only the taste of that soup. Yay, benadryl to the rescue.

Tonight, I tried some Indian food. It was pretty good, but I immediately started feeling bloated. You know that feeling you get after Thanksgiving dinner when you've eaten way too much, your jeans are too tight and you want to unbutton them, and you feel just a little nauseous.

By the time I got home, I was full-fledged swollen with cankles and swollen fingers to the point where movement was restricted. My joints hurt, actually it was more of a throbbing pain as if I could actually feel the blood pulsing through and around my joints.

Then the reflux and burping started. Flavor? Curried Onion. Lovely.

5 hours later? Still burping curried onion.

Hopefully this next dose of benadryl takes care of that so I can get some sleep.

Hostile work environments not uncommon for people with food allergies

This honestly is a perfect example of a day in the life of someone allergic. I just got off the phone with a friend of mine who is upset, and doesn't know what to do about it.

She has a job, and she's good at it. She works hard, pulls her weight, and will help out others if they need it. I know from having worked with her myself that she's a great co-worker.

She just has one little idiocyncrasy. She's violently allergic to cinnamon. Just a small dose of it can send her to the ER. Just a touch of it in the air can cause her to be unable to function like a normal human being (comparable to someone having smoked way too much weed). In both cases, her detox symptoms, symptoms of her body healing from a reaction, include irrational thought, panic attacks, paranoia, and anti-social behaviors. The more severe the reaction; the more severe the detox symptoms.

Since cinnamon is in a lot of places from candles, airfresheners, and foods cooking, she takes anti-anxiety meds daily as a preventative measure. She also carries benadryl with her 24/7.

She does her part to stay safe, but she has to work. She works in an office. Office environments should be simple enough to work in without food problems. McDonald's, or restaurants, it'd be pretty impossible to avoid foods, but in an office working with computers and papers, it should be really easy to make it a safe environment for food allergies.

The Americans with Disablities Act (ADA) has put in steps to ensure that people like my friend can find and keep jobs despite any extra steps the company may have to take. It ensures her right to work at any job that can reasonably accomodate her.  (AKA she won't be able to get a job at Cinnabon, but in an office pushing papers is totally manageable.)

All the company has to do is make a policy of no food near her workspace, and enforce it.

Unfortunately, her company is not very good at enforcing. They have made it known (not very well) that there is to be no scented anything on her floor (people kept bringing in cinnamon scented candles and airfresheners), and that there is to be no cinnamon things on the floor when she's present.

Her co-workers are seeing it as an infringment of their rights, and rebel against her. Since she is not management, they also see it as her being attention seeking and usurping authority.

She just doesn't want to go the the ER, or get sick.

If she goes to the boss and complains, its tattle taling. If she speaks out on her own to her co-workers, its usurping and who is she to tell them what to do? The policy itself gives her special treatment and they resent her.

Today she called upset because she's detoxing from yesterday's office debacle. One of her co-workers had brought in a cinnamon cheesecake to share with the office, and everyone was eating it around her.

She could smell the cinnamon in the air, and started to feel the reaction starting. She took benadryl, and asked them if they could finish the cheesecake outside or remove it from the premises. They refused.

Tired of battling with them and scared of a possible ER visit, she went down to the Employee Relations office and reported the incident as a violation of the ADA.  The Employee Relations personnel then went and told her co-workers they couldn't eat the cheesecake in the office.

Her co-workers put the cheesecake away.

Simple easy success right?

No. The minute the Employee Relations personnel left, they took the cheesecake back out.

If this was merely someone complaining that they didn't like something, or was trying to ruin people's fun, it'd be more understandable.

But these people are playing with someone's life. It's not fair, its not safe, and it's not sane.

It's getting to the point, that unless it becomes a fireable offense and a well publicised as a fireable offense, people will continue to have no reguard for other peoples lives.

Limb Sleeping, numbness, and allergic reactions.

Dear Body,

I'd like to have my leg back please. While this numb and unfeeling sensation is fun now then, it stopped being fun about an hour ago.

I no longer appreciate your sense of humor. So please, May I have my leg back now?

Sincerely,
Me

I've gone to the doctor for this a couple times now. I've been poked and prodded. I've had labs run. He didn't do ultrasound or xrays, but basically told me I'd be ok. It's only one little section of my leg on the outside of my thigh, and as much as I've searched online I've found absolutely no articles on numbness in that area. So I figure no one has died from it.

I haven't persued it with doctors very hard. Mostly because it doesn't feel life threatening, and I've found a system to its madness.

You see.. it only happens when I've eaten something I shouldn't have and usually hours later.

I've theorized that its probably my colon swelling up as the food passes through it and pressing on the nerve that gives sensation to that part of my leg. I got out anatomy charts and neurological charts, and it seems that the nerves and blood distribution for that section of the body start within the pelvic region, roughly the same area as the large colon.

It usually goes away in a couple hours. It's only mildly painful and more of a tingly pain. Similar to your leg or foot going to "sleep" if you sit in the wrong position for too long. The skin in the area of leg that's affected is slightly cooler to the touch than my other skin. It hasn't ever turned blue or anything severe looking. Just mild discomfort and a sensation that makes me wonder if I'd feel it if I stabbed myself in the leg.

Just another day in the life of food allergies.

See Also:  Meralgia Paraethetica

Unintentional Party Pooper

I came home early from a party. I really should have read the invitation much better than I did, but I'd been looking forward to this event for a while and wasn't able to go due to cost issues.. when last minute I managed to wrangle a free entry!  Woo Hoo!

So I went. Of Course.

I knew something was wrong when I first arrived as my throat immediately became scratchy. I figured it was leftover residue from people smoking outside, and ignored it.

Then as I began to explore the party, I noticed in the other room there were buckets of popcorn. Already popped. No popcorn popper.. Thank GOD!

Since the popcorn was in another room, and not really "airborne" I figured I'd stay and see how the night went, and things went well. I didn't notice much issues at all until a new crowd of people entered the party.

They found the popcorn, and decided to bring it .. all of it.. into the room where we all were. Right in front of me, a drunk guy dropped an entire bucket of popcorn. Then all the rest of the people began to stop it and stir it up in the air.

Yay me!

It wasn't too horrid, so I waited.

Immediately after, a guy was on stage with a couple girls singing a song. They were having fun, and he decided to add to the joy.

He picked up a bag of popcorn and began to toss it. Then he saw me, and began to toss it at me.. aiming at the drink in my hand.

If I had lasers to shoot out of my eyes the guy would dead. While I'm not necessarily "THAT" allergic to corn anymore, it's still like pelting me with poison. Of course, the drunk guy didn't know that and was confused at my party-pooper attitude.

I started to get cold. (Great! I thought to myself) I tried to move away from the popcorn hoping that alone would stop the reaction. Everywhere I moved I could still feel myself breathing in popcorn.

My lungs started to hurt and my eyes started to water. I had a song coming up and I wanted to wait for it.  I popped some benadryl and prednisone, and waited.

The pills seemed to have no effect. My body kept getting colder. My lungs started to feel like I'd accidentally swallowed some pool water. My eyes felt dry and irritated, yet watery.

I had to leave. I had to leave right then.

I didn't want to.. damn it.

But I couldn't deny my symptoms any longer. As it was, my fingers had turned to ice cubes and staying longer I'm sure my teeth would have started chattering.

I hate causing a scene, so I merely put on a calm exterior and said goodbye to my friends as if I'd suddenly just gotten tired, or forgotten that I needed to get up early tomorrow.

I stepped outside and the fresh air filled my lungs as if I'd suddenly come up for air.

It's been about a hour since I left the party. My fingers are warm again though I'm still a bit chilly. I've washed my face to remove any corn residue, but my eyes are still irritated and bloodshot. My lungs no longer have that underwater feeling and no longer hurt, but I can still feel them with every breath. I've also developed a slight cough.

I should be normal by morning. This allergy stuff just sucks sometimes.

Oh.. and I really hate popcorn right now.

Long Term Effects of Food-based Allergic Reactions

I woke this morning.. ok that's a fabrication, I woke up at 3am with a pain in my thigh. A strange pain that I'll equate with getting pierced by a knife. The pain hovering somewhere between a nick and what I imagine what actually being stabbed might feel like.

It was in all seriousness a "WTF" moment where I was pretty sure I was still dreaming or otherwise halucinating. I mean I was in bed, alone, without any sharp objects nearby. So the simpliest answer is the most likely; I was dreaming it.

So I attempted going back to sleep and nearly succeeded when I adjusted positions slightly only to find the pain had returned, instantly and sharply.

Now fully awake, I grazed my hand along my thigh and found a sore spot, but nothing seemed wrong otherwise. I was puzzled.

So I went to the bathroom and turned on the light to look at it in the mirror.

I saw it. I think I said about a million cusswords.

Since I'm not a dermotologist, I'm not sure what the correct word is for it. But I believe its called an abcess. Only it's not infected, its small about the size of a zit, bleeds every time I move, and hurts like a SOB everytime something rubs on it.

It'd been a few years since my last one, so I'd forgotten just how important staying on my allergy-free diet really was.

Not to mention that I'd forgotten how my allergic reactions affect my blood sugars. It's a long round about explaination that really would require a medical degree to fully comprehend, but essentially regularly eating my allergens causes a domino effect in my body which results in an inadequate supply of insulin. Aka Elevated blood sugars.

Prolonged elevation of my blood sugars (not as high as diabetes, but I assume uninhibited it would get there) also taxes my body and causes my cholesterol to be all wonky. Which if it gets bad enough, my endocrinologist will insist on putting me on meds (which I already know will contain something I'm allergic to.. requiring me to find a way to get them made special and cost me many moola.)

It's really hard to remember sometimes that that one little indulgence now, might effectively kill me in the long run.

That is until I wake up with the warning signs like today. If I'm really really good for a few days, it will disappear.  I'm hoping that my body will heal on the inside as well, but for now, it's detox time.

Adults have food allergies too

There are times that I just am bitter. I have happy days.. happy moments. Like today, I'd been putting off making lunch because I didn't want to cook, when I remembered I had some leftover pasta in the fridge. Just plain pasta. So I drizzle on some oil, sea salt, splash of lemon juice, some shredded fresh basil, diced fresh tomato and mix it all together for a delicious lunch. Yay, no cooking!

But there are also moments where I'm bitter. Like earlier today, I get my hopes up seeing a link that advertises that a magazine is looking for stories from allergy sufferers about their lifestyle, and about dealing with people who don't believe the allergy. I click the link, and its wanting stories from mom's about dealing with their allergenic children.

It's moments like this that make me want to scream: "Dear World, Adults have allergies too, and its not fun for us either."

But I suppose this is a lot like the "cute puppy" advertising problem. If it's ugly, disgusting, and yucky, no one wants to hear about it, let alone buy the product.  But if it happens to a cute puppy or adorable baby, then everyone takes action.

I just fear that it gives off this misinformation that allergies only affect children, and it makes me angry.

The hidden dangers of eating allergens

I did something bad. Something very bad and it resulted in me having very little memory of anything I did, said, or even was supposed to do during the last 4 days or so. I vaguely remember that I'd RSVP'd to something on Thursday and didn't show up.

Other than that.. Thursday, Friday, Saturday, and most of Sunday is a blur. Actually, on Saturday I clearly remember being so confused that I didn't know if it was 7am or 7pm. I remember it because it scared me, which is the reason that I even remember part of Sunday.

At the current moment, I'm jobless, single, and so have little real demands on my time that I don't create for myself.

In a moment of almost suicidal decision making.. I wasn't have much luck with the jobless issue. Due to the severe restrictions I had on myself to stay healthy, dating was becoming impossible. Even with my severe restrictions, I was still finding myself suffering through reactions.

It boiled down to... If I'm going to be alone and single, and I don't HAVE to be at work anywhere.. there is nothing stopping me from eating what I want.

So I did.

At first it went unbelievably well. I was shocked. I was expecting reactions to hit the Ricter scale at 7, and all I got was a 2.

So I tried it again. Something worse for me. Something that was truly dangerous. I really expected monumental problems. I got a slight headache that lasted 3 minutes, a little eczema outbreak, and some gas.

It was seriously a WTF moment.

However, as much as I know one of my allergens is nearly like crack to me. It's one that's the hardest to avoid.. lucky me right?  I wasn't really prepared for it.

What I'd planned (after the second trial of my allergens) as a once a week binge, just enough for a date or social event, turned into a once a day, twice a day, every meal, every snack sort of thing.

I found myself craving things that I knew had components of my allergens in it. Nothing else would satisfy me, and since my reactions were not horrid.. some skin blemishes (ugly & disgusting but not deadly), some sinus problems, cough, headaches, lots of gas, and some digestion problems.. I was finding it hard to resist those urges.

So I think it was Wednesday of last week, I went and purchased some groceries that were easy to fix and "allergy-lite". Items that contained only small amounts of my allergens. I purchased enough of these foods to last me for a few meals. I planned on eating one meal a day of it at most.

I should have caught on earlier, but I didn't. One meal of it and I was too tired to cook my allergy-friendly food. So I made an allergy-lite quick sandwich. Then another.. and another.

By Friday, I was feeling under the weather a little, but I don't really think I was thinking well enough to clearly assess my own health.

Saturday, I was dazed and confused. This set off alarm bells in my head. I clearly remember telling myself that I had to stop.  I also remember trying to remember how many days it'd been since I'd done anything productive. I couldn't remember anything. I couldn't even tell you when was the last time I'd fed my dog. Luckily there was still some food in her dish. I gave her more just in case.

Funny thing is that I started going allergy-free because of the worsening health and digestive issues, and didn't even notice the mental complications. But even though my health was clearly getting worse by Saturday, that wasn't the deterrent. The deterrent was simply that I was so out of it, I knew I was missing out on life itself.

Sunday, I used what little energy I had to make an easy broth soup.  By Sunday night, I was thinking more clearly and detoxing.

Today, I'm pretty clear. I seem to recognize time passing, which is a good sign.

Despite feeling like I missed a few days, I'm actually looking back at this as a positive experiment. It has shown me that I do have to stay diligent, but possibly that I can once in a while screw up and live through it with little consequence. However, I cannot allow myself to think that its ok to do it on any kind of regular basis. The potential costs are way too great. (And if I can't control myself on a once in a while screw up, that's going to be out too.)

People ask me all the time about my allergy symptoms.

"What happens when you eat it?"

There are so many parts of how it affects me that I cannot put it into words. Simply put.. my answer is this..

"It won't kill me. It will just make me wish it had."  One way or another this is true.

(Disclaimer: This experiment was only with allergens that I have a past experience of non-deadly reactions. Any foods that I feared a severe or deadly reaction, I still avoided. This is not an experiment that I would advise anyone to do on their own without doctor supervision or without proper allergy medications handy - epipen. I just got lucky.)